Monday, May 2, 2011

Yesterday Wrenn visited the Immunologist. The doctor said that Wrenn’s levels are great and felt that the only reason her immune numbers were so low previously was because she was so sick going into transplant and had a really rough/long recovery. The good news is that she doesn’t need any more monthly infusions and doesn’t need to be seen again by the Immunologist until September. Thankfully, Wrenn’s still heading in the right direction and we’re happy to see the bumps only in the rear-view mirror.

During Wrenn’s journey in the NICU I was introduced to Dr. Rosenbaum. She specializes in how parents want their children cared for, especially those patients who are high-risk or near the end of their life. She was involved in Wrenn’s care concerning her sedation medications and visited us many times during the week and even on the weekends. She wanted to make sure we understood the methods used in keeping Wrenn comfortable.

I’ll admit, there were days I thought we were going to have the discussion of where our limits were with Wrenn’s care as we neared the end and I’m glad the new lungs arrived ‘just in time.’ Things could have turned another corner at any given moment. I was thankful Dr. Rosenbaum was involved and that she cared so much about Wrenn’s well-being, but also made sure we were all on the same page. My biggest concern was that Wrenn wasn’t suffering.

Working so closely with Dr. Rosenbaum we formed a bond of mutual trust, which didn’t happen overnight. But as we built our relationship she asked if I would one day be interested in speaking to her first year medical students to share our story. At the time (back in mid-August) I remember thinking, “Oh my God, I’ll never get through it!” But then I figured as time passed and things got less crazy I’d have no problem sharing Wrenn’s story. Immediately I was on board!

Well….Sometimes tasks sound so much easier than they really are. Over the last twelve months I’ve shared my story with several doctors, nurses, friends and new acquaintances and there’s one thing that’s always consistent; when I begin talking about how it all started, I get choked up. EVERY TIME! It’s starting at the beginning that’s the hardest and I don’t know why, especially since things have turned out, as I wrote in my previous entry, ‘perfect.’ (As perfect as life can be under the circumstances.)

Finally, last Monday, at my speaking engagement with Dr. Rosenbaum’s students, history repeated itself. I opened my mouth and immediately felt a lump in my throat: an overwhelming feeling of sadness and darkness grabbed my breath. I couldn’t talk. I was frozen in time and then I realized that even I couldn’t believe that this was our story. It’s been a year now. ‘Shouldn’t it be easier to tell?’ I thought.

After what felt like twenty minutes of dead silence I finally composed myself and began; but shakily, sadly and I kept whispering to myself that I was there to speak so… KEEP SPEAKING! I then yelled at myself to pull it together and to keep going as the students stared me in the eye. I dug deep and then I found myself angry because I appeared weak. For all those months of waiting, watching and wondering, I was strong for almost all of it. I wonder now if maybe I should have been more emotional to really get it all out. Maybe then I’d have an easier time talking about the life we lived for 365 days.

I imagine my reaction is similar to how some people have reacted tp the death of a loved one. At the funeral there are no tears and then a couple of days later, it hits them like a ton of bricks. I believe this is what happened to me. I guarded myself for the ‘what if’s’ and now I feel most vulnerable when telling her story. To be honest, I don’t think I’ll ever be able to tell Wrenn’s story without shedding tears. Those first few weeks were the most painful and as I’ve said many, many times, I hate going back. Mentally it’s so painful. I lived it! I don’t want to relive it. So why did I put myself through a speaking engagement? I want to—need to somehow give back. I have a wealth of knowledge and feel I can pass that on to others in whatever capacity it might be. They will understand how a husband, a wife and a sibling got through it all.

As I spoke to the students about Wrenn’s initial diagnosis I asked them if they’d ever known anybody who needed or had a transplant. They all said no. I then realized that there was no way in a million years I’d ever be able to explain to these first year medical students what’s entailed in receiving a double lung transplant; at least not in ninety minutes. Transplant in itself is complex. It’s life changing. It’s not a cure. It’s expensive. It’s unknown. Statistically, it’s not favorable. Yet, it’s an opportunity. And all of it is a leap of faith.

I did my best. I gave Cliff Notes but to be honest, the two-hour visit felt very unfinished. I didn’t feel like I gave it my all. I didn’t feel prepared. I didn’t feel like they totally understood; how could they? I went through it and I can barely grasp the reality of our situation. I then thought back to those first few breaths when I froze with tears and realized that my emotions probably said it best. It was hard and still is.

My hope is that each student went away inspired by just one thing I said. No matter how much they actually consumed, I pray that they remember a single aspect of our story. Maybe they’d remember how I made them laugh when talking about my son’s pacifier habit, which has obviously brought him comfort. As a matter-of-fact, if I thought a binky would cure my baby blues, I’d have sucked one all year long!

I hope as time goes on that I’m able to talk about our story with more joy than sadness. Wrenn's story is so amazing and I want to tell it with an inspired tongue and with happy tears. Maybe Wrenn will be better at telling her story than her mommy. I guess I’ll just have to keep on doing it until she can do so herself. Then I know the story will be told perfectly. As always, in Wrenn time.

6
comments:

Anonymous
said...

So beautiful Niki! When we went through the heart transplant with my Uncle the ups, downs, and run arounds were so very difficult. He lived the rest of his life knowing that by being in the first few hundred club he was taking a risk that would pay off for others in the future. Seeing Wrenn smiling and happy I like to thing he would tell us, " no matter how rough it was it was all worth it for that one smile." I am sure Wrenn will tell her story beautifully just as I am more than certain that the way you told it to the students was powerful and that they learned much from you. Hugs, Joy

I can't begin to imagine that what you had to say didn't have some sort of impact on those in the room. You did your best and no one can or should ask for more. Maybe one day when those students become parents, they will understand better than they did the day you spoke to them. You and you alone can only tell your story and an amazing one at that! It will be so interesting to hear what Wrenn will say when she is old enough to comprehend what she has been through and how much she will remember.Way to go Nicole! Continue to get Wrenn's story out there whenever you can with or without tears. After all, you, Jason & Tanner have lived to the edge of Hell, but a loving and faithful God didn't let any of you fall over.SusanFrostburg, MD

Harriette
said...

Nicole, you are truly amazing....and Wrenn and Tanner are such precious children!

Kim
said...

Nicole, please do not think of yourself as weak. You have went through so much this past year that most of us cannot grasp. How can you expect yourself to grasp all that you went through? Susan above had already said what I was thinking also. Keep your chin up and know that you and your family are truly amazing people. Please continue to educate people through tears and all!

Wrenn's Baby Breath Fund

Click here to DONATE through the National Transplant Assistance Fund. Any help you can give will go directly towards Wrenn's medical expenses. Thank you!

Wrenn's Story

Wrenn was born on April 14, 2010. She was a little early, but not alarmingly so, and at 18 inches long and just under six pounds she was pink and pudgy and looked to be the picture of newborn health.

Unfortunately, Wrenn quickly developed breathing difficulties and needed full-time oxygen or her little lungs would collapse. Doctors suspected that Wrenn might have a rare genetic disorder called Surfactant Protein Deficiency.

Shortly after her birth a series of tests were run, and on her one month birthday her parents found out that Wrenn does, indeed, have the incredibly rare genetic disorder known as ABCA-3 Surfactant Protein Deficiency.

Wrenn needed new lungs and in September 2010, two months after her family relocated to St. Louis, she received a double lung transplant.

This site has been created as a space for Wrenn's family to keep friends and family updated on Wrenn's progress. She's a fighter, so we expect lots of updates!

Wrenn's parents have good health insurance, but they're still going to have huge medical bills to deal with, so we hope that anyone who can will donate to Wrenn's Baby Breath Fund using the NTAF link above.